Patient and relatives/carers experiences
We feature here the experiences of real MDS patients and their families and carers. They have been willing to share with us their stories and photos, in the hope that fellow patients will find it helpful to read how they have learned to live with MDS.
Readers who don’t know much about MDS will hopefully gain a better understanding of this complex disease by reading these patients' stories.
Please do send us your contribution – whether you are a patient, family member or friend:
Email it to firstname.lastname@example.org or call to our main office Tel: 020 7733 7558.
You may talk about any aspect of the condition, or how your experience has affected or changed you. Feel free to add photos as well.
Thank you in advance!
You are also invited to join our forum, a lively community of MDS patients sharing their own experiences and questions.
What national and international patient advocacy what national and international patient advocacy work can achieve when working in cooperation By Blerina Ahmetaj-Shala. Imagine hearing the news – you father in law, a young, fit and seemingly healthy person has MDS. What was MDS though? I had never heard of it despite working in science myself, […]Read full post
Following is an article by our friend and long-term MDS patient advocate from Germany, Bergit Kuhle. Bergit, together with Anita Waldmann, runs an MDS Patient Group in Germany, and both are founding members of the international MDS Alliance – the umbrella organisation for all national patient groups in the world. No chance to lay down […]Read full post
“I hope and trust that my little story would encourage other MDS sufferers to decide to go through with the treatment. It was proved that even patients who are more than 60 yrs. old can benefit from Bone Marrow Transplant. The reduced regime used to treat me has been quite successful. It is not as stressful […]Read full post
Reginald Hall’s story is an uplifting one. Reginald is an MDS patient who has been a member of MDS UK Patient Support group for quite some time. Lately we received a couple of letters from him and he allowed us to share them with our members on the website. Read MoreRead full post
Evie McClean is a young member of the MDS UK Patient Support Group. In July 2014, when she was 8 years old, Evie was diagnosed with leukemia. After 4 months of chemo she had 6 month of remission, but then she became ill again. In July 2015 she was diagnosed with MDS and bravely endured […]Read full post
How a clinical trial gave me my life back after MDS and AML Five years ago, my spouse and I had settled into our dreamed-of retirement. But on Feb. 6, 2012, I was diagnosed with myelodysplastic syndrome (MDS). Because I was in my early 70s, a bone marrow transplant wasn’t my best option. What happened […]Read full post
I first visited my GP in March 2014 with the symptoms of a condition which was eventually diagnosed as Sideroblastic Anaemia. I was 59 years old, still working full time as a Chartered Accountant, and enjoying a life without any responsibility except for work and home. The Haematology Clinic at the PRU and the Supportive […]Read full post
Sachyio lives in the UK. Her Mum has MDS, but lives in Japan. A few of our members have family far away, and when travel is particularly difficult or expensive it gets really hard. So this is the contribution of one daughter – helping her Mum cope with MDS and helping to raise awareness internationally. […]Read full post
I have been fighting blood cancer for 12 years, and I have been fighting it hard. I have taken every opportunity given to me to treat it and live my life to the fullest. When my MDS relapsed and showed signs of progression to AML in July 2015 I was shocked to find out that […]Read full post
“I was in my early 30’s when I was diagnosed with MDS 5q- when there was very little to offer in the treatment of MDS other than supportive care, or bone marrow transplants. “ Fiona is an MDS del 5q patient, and is being treated with lenalidomide. Read MoreRead full post
Jayne writes about her MDS diagnosis and treatments leading up to her stem cell transplant in July 2012. This article was published in the MDS UK Newsletter 3 and 4 – in January 2013 – and Sept 2013. “I lived 42 years with my original blood and immune system; the plan is to live 42 […]Read full post
We have uploaded a new video clip of our friend and new MDS UK trustee Russell Cook. Click here to view the full article. He tells us in detail about his experience of his three stem cell transplants – two from an unrelated donor – which failed, followed by stem cells from his 15 year […]Read full post
Secondary MDS (following breast cancer) – with chromosome 11q deletion Diagnosed 2010 – age 67. Watch and Wait/Watch and Monitor “I have never met anyone else with M.D.S. but would love to hear from anyone with similar experiences. Unfortunately I am a techno-dinosaur, but Sophie has my address.” Maynel Vessey – MDS experience Secondary MDS […]Read full post
Daisy, diagnosed as a teenager, is one of the uncommonly occurring cases of MDS in young people. Although Daisy was successfully treated with Bone Marrow Transplant few years ago, her journey with cancer hasn’t ended there. She decided to use her experience for the benefit of other young people suffering from cancer in UK and […]Read full post
Anthony, diagnosed with high-risk MDS and is currently being treated with Azacitidine. His route to diagnosis wasn’t a straightforward one and required a deal of determination and perseverance on his behalf to find the cause of the symptoms with which he was struggling for some time. Sadly, this also had an knock-on effect on his […]Read full post
Rodney was diagnosed with MDS at the age of 64. Within a couple of years, his symptom-free illness, at first, progressed to a hugely debilitating condition. Having entered a clinical trial of a promising drug treatment with azacitidine, Rodney was eventually freed from fatigue and transfusions for 4,5 long years, and decided to actively campaign […]Read full post
Andrea diagnosed with MDS RAEB-t type at the age of 29 was treated with bone marrow transplant in 1994, but relapsed a year later. With 5% chance of success, she was advised against the second transplant. Following a gruesome period of intensive chemotherapy treatment, she fought to have a last-chance treatment called donor lymphocyte infusion […]Read full post
This is the contribution from a loving daughter, who looked after her Mum. This was written to help other family members or patients to prepare themselves when it is established that nothing else can be done – or if a patient has decided they do not wish to undergo any further treatment. It is written […]Read full post